Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine.

Saturday, August 18, 2012

I want to go...

Is what Luke has been signing since he woke up in post op.

Luke woke up and did really well during and right after surgery. However, after the anesthesia wore off he didn't have enough pain meds in his system and he was hurting bad for a bit. He is so hard to read about pain. First because he has no facial expression. Second because we don't have experience with pain. He is usually so crazy and flailing when you do blood pressures, weigh him, and do simple things that it would mask any pain. However with this surgery I can see him zone out and become unresponsive to me talking to him and getting super ornery as well as increased heart rate when he is in a lot of pain. I can tell that he is uncomfortable as well more now too.

He is doing a good job signing with elbow emobilizers on and using the iPad to tell us things. He can't tell us about his pain l level on the iPad thoug and I wish he could. He just pushes the button that I said last.

He did really well
Until last evening and didn't sleep even though tired until after 2 am. He has been resting today and sitting up to get a real shirt on took a lot out of him. Right now he is trying to sleep but tossing a lot. He has a number of does of pain meds now so I don't think he is in pain but I can only imagine he has to be uncomfortable.

We have a lap desk all washed and so when he is up to it he can play with his toys.

Back to the surgery itself. The doctor said that Luke has healthy bones which is good. The difference between his upper and lower jaws increased since he saw him last year. They plan to move his jaw out 20 mm and that will give him a little bit of an underbite and room for his upper jaw as it grows faster than the lower jaw. We will start turning on Monday and turn .5 to 1 mm a day. After the turning is done the posts sticking out of his chin that we used to turn the internal device will be removed. Then the internal device will be removed when the jaw bone heals in 3 or more months. They said if things are going well developmentally we can leave the device in for up to a year.

Since I started writing Luke is now sitting up and reading books. We have had baby signing time music on almost continuously since we got to the PICU so maybe I can convince him to listen to something else for awhile.

I am writing this over the whole morning and Luke tired out fast and is back to resting laying down on the vent. Grandma is by his side giving him some food. Which thankfully hasn't been a problem since surgery.

So we continue recovery and may be moved to the stable vent unit later today. Which means he can go for stroller rides:)